Life Lately [It's Been Craaaay!]

Life has been pretty crazy lately and so much has happened I don't even know where to begin!

Since I just posted an update on Holden, I'll start with a quick update on my other little. Aurora is seriously the best big sister ever. As I mentioned in my last post, Holden loves her so much and just stares at her in awe when she walks into the room. She'll dance and sing for an hour straight, just to entertain him while we need to make dinner or get stuff done. She finished up with cheerleading a few weeks ago, just in time to start acting classes. This girl just loves to try all the things! I have such a hard time saying no to her trying things out, considering I'm 32 and still don't know what I want to be when I grow up. But I have to say, I think she has met her match with the acting classes. I haven't had the chance to see for myself yet, but I get to hear all about how much fun she has from her and from family members that have helped taxi her back and forth. Unfortunately, karate has taken a bit of a backseat, but I'm hoping with cheerleading ending, we can get back to it and get this girl her black belt! We had her parent/teacher conference last week and she's doing amazing in everything. I think what stood out to me the most is that her teacher went on about how she is just always so happy in class and seems to really enjoy being there. This made my heart so happy to hear, especially since she's definitely taken a hit in the attention department since her little brother came along. I never want her to feel like she's any less important to us. She makes us so proud every single day and I just love the little lady that she's becoming!

In other news, I started a new position at work last week. A part-time position!!!!! Woohoo! Leaving my last position was such a hard decision to make. I had amazing bosses, worked in a suite with an amazing group of people, and it really was a position I could've been content in for a while. However, there has always been a part of me that has hoped that some day things would work out to where I could spend more time with the kiddos. Of course, being the one that handles the finances in our household, it seemed like that day would never come. You can never not use more money, right? I guess, with all that went on with Holden over the summer, it just really put things into perspective for me and I started thinking that if I don't make the move now, I'll likely never do it and I know I'd regret it - in a major way - down the road. I kind of already regret not doing it when Aurora was younger. Aside from the whole mom guilt thing, our schedule was just getting too overwhelming, as well. Now I work three days a week... and... AND! I'm a room mom this year in Aurora's class!!! So I feel like I'm totally making up for some lost time with her. Maybe I was just really inspired when I saw Bad Moms last year, but I'm so freaking excited! I get to go to her classroom for an hour and a half every other week to help out. And, I got to work with another mom to plan her class Halloween party they had last week and it was such a success! Those little second graders touched my heart in such a special way. They were so sweet and thankful for us coming in. One little boy gave me a spiderman sticker and told me Aurora was so lucky to have me as a mom because his mom just makes him apple crisp. <3 <3 <3 I kinda want Aurora to marry him. Kidding, kidding, but such a sweetheart. [Side note: I have literally never made Aurora apple crisp and now feel like such a failure because of it.] I told him apple crisp is awesome and he was pretty lucky to have a mom that makes it for him. [Another side note: I really want some apple crisp right now.] Anyways, last week was everything I hoped it would be. Last week reassured me that we made the right decision for me to go part-time. And Jose. How lucky am I to be married to someone who loves his family so much that he's willing to pick up overtime if we need it, so that I can do this? I feel like I've already accomplished so much in the days I've been off (helping out in Aurora's class, running errands, scheduling appointments we've been behind on, ...ahem, learning how to mow the grass!) Jose may see a return on his investment quicker than he's expecting! Well, maybe not, though. I've never considered him to be a controlling person. At all. Except for the other night when I was mowing. Anyways, I already feel so much of whatever it was that I was needing to feel by going part-time. As for my new position, I work with another amazing group of people. I'm helping to implement a new scheduling program that seems like it could be very useful, once everyone is on board with it. And, ahem, I have a pretty amaze parking situation. :D Needless to say - I'm excited. Excited for more time with the kiddos, excited for more time to do the things that need to get done, excited for this new position, and excited to hopefully, maybe, have a little more time to spend on this little space.

Aside from all that, we had some amazing family pictures taken (first time in a few years!), so I'll be sharing some of those soon. We also started a new sleep routine with Holden that seems to be working well, so I'll be sharing info on that eventually too. I seriously have so many posts started in my little Blogger dashboard, that I'm hoping to finally finish soon! So stay tuned!

And, for whatever reason you come here to read my nonsense, thank you! I'm so awkward, talking in person, so being able to blab on here is a great release for me! (That was a plug for my post on social anxiety that will also - hopefully - be coming soon!) Okay, I'm officially rambling, so I'm out! Xoxo

"Room Mom Chic" 

The fish tail totally didn't make it out of the house.

A little behind the scenes glimpse at our family pictures!

Holden | 5 Months

I'm a little late on this, but life has been so crazy lately! Holden is five months old now, and still as sweet as ever! He's 18 lbs. and has maintained that weight for about a month, as he's no longer on fortified formula. The last time we met with his feeding team, which was around mid-September, he had another swallow study that revealed he's still aspirating into his lungs. Hardly at all, but it's still there, so they nixed the bottle all together. Is it weird that it made me sad to hear that my five month old would never drink from a bottle again? Aren't parents supposed to be excited when their baby passes this milestone? I was also worried about how not having a bottle could potentially effect his speech down the road, if he's not using those muscles, but they did introduce baby food so he's been eating that, along with his formula that he gets through his g-tube. His favorites so far are bananas and sweet potatoes! He also loves his binky, so I think between that and the baby food, his mouth muscles will be working enough that it shouldn't effect his speech.

While there are some things he may not be able to do because of his PRS, there's also the factor that, because he had to start holding his head up earlier on in order to breathe, he's a pretty strong little fella! I remember his first appointment with his pediatrician, after we came home from Riley, and she made the comment that his PRS doesn't seem to hold him back at all. And, from what we've seen so far, it certainly does not! He's been rolling over for about a month now. And the past couple days, he's able to position himself in crawling mode. I still think we have a bit until he actually gets moving, but he definitely watches his sissy's every move and I know he's dying to go wherever she goes. I'm trying really hard not play the comparison game, though, because I know every baby is different and, just because he might do one thing early on, does not necessarily mean he'll do everything that way. And even if he does, does it really matter? Is there really a difference if he starts walking at 11 months or 18 months? Society sure has it's way of making us feel awful when someone mentions that their baby did this or that, and ours isn't even close yet. "Us" and "ours" meaning, as a whole, not saying Jose and I in particular. I think it's just such a relief, after reading so much about how PRS babies tend to be delayed in their development, that he doesn't seem to be showing signs of that. In fact, ever since he had his jaw distraction, I feel like he's almost a "normal" baby. I hate using that term, but you know what I mean. Aside from his cleft palate (which I often forget he has) and g-tube, he's just like any other five month old baby. I'm a little nervous about his palate repair, as they say that's the hardest of the surgeries, in terms of recovery, but turns out Holden has a lot of people pulling for him and I'm so very grateful for that!

A few other things about our little guy, as his personality is starting to come out more and more... He's super smiley in the morning, making it nearly impossible to leave the house each day. I literally go back to him like four times, before I'll actually walk out the door. Aurora was that way too and now she's about as pleasant of a morning person as her mama. Holden really does just love to be held all day, every day. I'm sure this developed both while down at Riley, as we'd hold him any chance we could, and also while he had his NG-tube. We held him all the time because that damn thing made him so uncomfortable. Even when we'd hold him, he'd cry, but I think he at least felt a little comforted. Now, I think he's just so used to being held that it causes confusion when we try to put him down, lol. #bossbaby He loves to get out and explore so we'll go out, mostly when Jose is off, just because it's a pretty big production to do it when it's just me, but I like to take him on walks, or even just sit out on the porch with him. Especially when it's raining. I think he loves that too because he always falls asleep! We help him pet Zoey, which he loves, but we just have to make sure he doesn't pull her fur like he pulls my hair! Zoey is so good with him, though, and I don't think we could've asked for a better dog to be around kids. Holden really loves Aurora so much and just stares at her in awe, most of the time. I hope this continues as he gets older! He likes to play in his little activity jumper thingy quite a bit, which comes in handy when I've been holding him for hours at a time and my arm is numb. Just about anything and everything goes in his mouth and he's been drooling quite a bit. If I remember correctly with Aurora, the teething seemed to start early on (like around 3 months), but it wasn't until about 6 months that she actually started cutting teeth. He still loves bath time! Still loves to pull my hair. He's also discovered his little toes and tries to put them in his mouth any chance he gets. He also loves ceiling fans and light fixtures. Every time he sees the light above our kitchen table or our kitchen island, it's as if he's never seen it before. He gets so excited!

You guys. I just love this sweet little boy so very much! We all do. He is like the piece to our family that we never knew was missing and now that we have him, it's hard to remember what it was even like before. We love, love, love you Holdy Man! To Mars and the stars!

PS We have had a few experiences with how people react when they realize Holden has special needs (feeding tube), and I'm not going to lie, sometimes it stings a little. I totally understand and welcome questions. I actually don't mind talking about his condition, like at all. Most of the time, I'll actually start the conversation. If people notice his scars and say something to the effect of, "Oh, what happened there?" I am all about educating them. Most people are genuinely just curious and have simply never heard of it. After all, before Holden came along, we hadn't heard of it either. But, when we're feeding him out in public, and someone approaches us and asks,"What's wrong with him?" it's extremely hard for me to respond with anything other than, "Well, nothing is wrong with him, but wtf is wrong with you that you think you can start a conversation like that?" I really try not to be overly sensitive about it, but we've literally had someone at a restaurant (that worked there, mind you) stop at our table and just stare at him, while we fed him. Pretty sure even Holden wanted to ask her if she was going to be alright. Anyways, I guess sometimes people might not mean to come across the way they do, and I'm certainly no stranger to saying things the wrong way, but the first time it happened definitely caught me off-guard. Especially when you see all the progress he's made and other people seem to focus on the one thing that still makes him different.

Holden's last time drinking from a bottle...

And his first time eating baby food! (sweet potatoes)

Holden is 4 months old!

Well, sorry, Friends! We got a little busy today and I just had time to snap these [poor quality] photos of Holden for his 4 month pictures. Our little guy is doing so good since he's had his distractors removed and g-tube put in! He's so much happier! He smiles more and is, overall, just more content. He still loves his bath time. He loves clenching his little fists around whatever he can get a hold of. Especially the skin on your neck and hair! We literally have to pry his little fingers open one by one. He has the sweetest, little giggles and loves to be tickled. He coos a lot. He already adores his big sister so much, and smiles whenever she walks in the room or goes near him. We have the best time ever just laying on our bed taking turns tickling him or doing really anything that will make this little guy laugh. He also loves his binky! He's started drinking more out of his bottle again. He was doing half-feeds and then, after his last surgery, he didn't want to have anything to do with it and we were worried that maybe he'd developed an oral aversion. But the past few days, he's drank more out of his bottle than he did before surgery. Tomorrow we have appointments with his doctors at Riley and he'll have another swallow study and they may introduce pureed foods! I'm so very grateful for his progress and that God blessed us with this sweet, little boy! We love you, Holden!

Photoshoots are a family affair in our household!

Holden's G-tube Update

You guys. First off, I hope you're never in a situation where a G-tube has to be an option for your child. But. If it is, DO IT! Seriously! I fought it pretty hard because I didn't want something that was so temporary that would leave a permanent scar. I thought the NG-tube was the safest option because one, it doesn't require surgery. And two, it wouldn't leave a scar. But I cannot tell you what a difference it's made! This is the first bit of normalcy we've had since Holden's been born! The day after we got home from Riley, we conquered the zoo and grocery shopping. That was literally unheard of before. Poor guy was so uncomfortable with his feeding tube that he just cried all the time. Now he'll cry a little when we first feed him, but I'm guessing it's because his little belly is still a little sore from getting his tube put in. Aside from that, he's so much more content. Again, I hope you're never faced with this decision, but if you are, you will not regret it!

Holden's Distractor Removal and G-tube Surgery - Part 2

Well, Bud. It's been about 24 hours. It's been pretty uneventful for the most part, which means you're getting your rest, so that's good! 

Yesterday, after Dr. Gerety finished his part of your surgery (distractor removal), we went back into the consultation room to meet with him and the first words out of his mouth when he walked in were, "Everything went great!" (So, basically all I needed to hear at that point!) He did say that normally the distractors slide right out (of the hole in your jaw that they screw them into), but yours didn't, so he had to unscrew yours. Which was no biggie, but just took a bit longer. We talked to him for a few minutes, asked him some questions, and then returned to the lounge. We're so grateful he's your doctor. He is truly amazing!

About 15 minutes later, the doctor who put your g-tube in came out to the lounge and said everything went great and that you were back in recovery and that we'd be able to go back in about 20 minutes. 

We were so excited when we got to go back and see you. The nurse said you were pretty unhappy when you came out of surgery, so she'd given you some Morphine. 

A few minutes later, you were wheeled up to your room.

You slept for most of the afternoon, crying here and there in between. Mommy and Daddy both got to hold you a bit, but you seemed to be more comfortable laying in the hospital bed. 

When you had your first feeding from your g-tube, you cried a lot. I'm sure opening/closing the little button hurt pretty bad for the first time. The nurse left the tube in, so we don't have to keep opening/closing it until it's healed a bit more. (Normally you take part of your feed by bottle, but you didn't seem to want to do that. I'm guessing your jaw hurts pretty bad right now.)

You continued to sleep throughout the night (even through feedings, the nurses checking your vitals, etc.), which gave Mommy and Daddy a chance to catch up on some sleep, too. So, thank you! :)

The doctors have all been in this morning and say we get to go home today! Your jaw is pretty swollen (more than usual), but the doctor said it's likely since he had to unscrew your distractors and as long as your breathing continues to be good (it's been fine so far), then we're good to go! 

This trip sure has been different than the last time we came down here. Everything has gone so smoothly and there haven't been any tears from Mommy - yet. I just can't wait until we're all back home with Sissy. Love you, Bud.

Update: We're going home!!!


Update: Here's some pictures of us leaving Riley and little man swollen from distractor removal. The swelling only lasted a few days.

Holden's Distractor Removal and G-tube Surgery - Part 1

Well, little guy, you're back in surgery as I type. It's such a weird feeling, sitting here in the family lounge. Waiting so impatiently for someone to come out and say everything went great and you're doing great and that we can go back and see you. The last time I saw you after surgery, when you had your distractors put in, you were intubated for a few days afterwards and I couldn't hold you. Now, it seems like this two hours is going to take forever, but knowing I'll get to scoop you up almost right away makes it all seem okay. Gosh we love you little man! 

Your Grandma MaryAnn made sure we knew she was watching over you today, too! Apparently 7 years from today was when she and I became Facebook friends (Facebook might be an ancient form of social media by the time you read this!), so Facebook let me know it was our Friendiversary. It stung a little at first seeing that, since she passed away in March, but then I realized it was a sign. Love when things like that happen! 

Alright, Buddy. Mommy's waiting for you... <3

Here's the last picture of you with your NG-tube! Hoping this G-tube makes a world of a difference for you, Bud.

Holden is 3 Months Old!

I am three months old today! I weigh 15 pounds and am 24 and a half inches long. I LOVE bath time and being without my tube for a few hours a week! I love when daddy takes me on walks down the street and his tickles make me laugh so hard! I also enjoy pulling Mommy's hair, and when she carries me around in my Solly wrap. I have the best big sissy ever! She loves to pick me up and carry me around the living room. I'm most content when being held. Right now, I make cooing noises that sometimes sound like I'm saying "Hi!" And I've just started sleeping through the night. I think I'm going to keep it that way, because it makes mommy and daddy very happy. :) 

My doctor says my PRS hasn't held me back from anything! Here I am holding my head up during tummy time!

In two weeks, I get my distractors out and my G-tube put in, meaning no more tape on my face or tube down my throat. Prayers for my surgery are greatly appreciated!

Love, Holden